Co-designing a Decision-Making Roadmap to Support Caregivers of People Living with Dementia: A Knowledge-to-Action Approach Using Integrated Knowledge Translation and Graphic Medicine

Background: Caregivers of people living with dementia frequently act as substitute decision-makers and are required to make numerous health, personal, legal and care-related decisions throughout the dementia trajectory. Despite the complexity and longitudinal nature of this role, existing supports are often focused on discrete decisions and may not adequately address caregivers’ evolving decision needs. Objective: The aim of this dissertation was to better understand how caregivers navigate decision-making across the dementia trajectory and to co-develop an evidence-informed roadmap to support caregivers acting as substitute decision-makers. Methods: Guided by the Knowledge-to-Action framework and informed by integrated knowledge translation (iKT) and patient-oriented research (POR) principles, this multi-phase study consisted of three sequential phases. Phase 1 involved a scoping review to identify and evaluate existing decision-making tools and resources for substitute decision-makers. Phase 2 used qualitative interviews and graphic medicine with caregivers of people living with dementia to explore decision-making experiences and identify key decision areas encountered throughout the dementia trajectory. Phase 3 involved caregiver focus groups and a World Café with caregivers, health and social care providers and community organizations to refine a visual decision-making roadmap and identify implementation considerations. Results: The scoping review identified a range of decision-support resources but found that most focused on discrete decisions and did not reflect the longitudinal nature of caregiving. Qualitative interviews identified seven key decision areas encountered across the dementia trajectory: diagnosis, advance care planning, driving, day-to-day decisions, self-care, placement, and end-of-life care. Caregivers described decision-making as emotional, unpredictable, and ongoing, often occurring within the fragmented health and social care systems that left them feeling unprepared and unsupported. These findings informed the development of a visual decision-making roadmap. Through engagement, 94 suggestions for refinement were identified, resulting in 34 incorporated modifications and the identification of implementation strategies related to accessibility, facilitation and use across formal and informal care settings. Conclusions: This research program advanced understanding of caregiver decision-making by demonstrating that substitute decision-making for people living with dementia is a longitudinal, emotional and relational process rather than a series of isolated decisions. Through the integration of iKT, POR, and graphic medicine, this research resulted in the co-development of a caregiver-informed decision-making roadmap grounded in lived experience and end user perspectives. The findings contribute to knowledge regarding caregiver decision-making, provide a practical support resource for caregivers and providers and establish a foundation for future implementation and evaluation research.

Name thesis:degree_name

Doctor of Philosophy (PhD)

Discipline thesis:degree_discipline

Medicine – Community Health Sciences

Grantor

Cumming School of Medicine

Year dc:date.issued

2026

Author dc:creator

• King, Seema

Advisors dc:contributor.advisor

• Simon, Jessica
• Holroyd-Leduc, Jayna

Committee members dc:contributor.committeemember

• Santana, Maria
• Venturato, Lorraine

Statement dc:rights

• University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.

Language dc:language.iso

en

DOI

https://dx.doi.org/10.11575/PRISM/51677

OAI identifier oai:identifier

oai:ucalgary.scholaris.ca:1880/125406